This is our record of the short life of our son, Samuel, and the days following. Samuel was born on August 1, 2009 with several heart defects and very sick lungs. He died on August 31, 2009. August was a holy month for us,and we are so grateful for the days we had with our third son. We are convinced that our God, who carried us through each moment, is GOOD and TRUSTWORTHY. We are learning to praise Him in new ways and depend on Him more fully as we grieve Samuel.

Thursday, August 20, 2009

Fragility, Fear, and Faith

All in all, it was a pretty decent day in the CICU for us. Samuel had his bronchoscopy this morning shortly after we got to the hospital. Kicked out for the procedure, we decide to spend the 40 minutes (that’s how long they predicted it would take) in the lovely garden. About an hour and 20 minutes later, we were starting to feel nervous (though by now we really should know that everything takes twice as long as they tell us). When my phone finally rang, the woman on the other end merely asked us where we were and then told us Dr. Schechter would come meet us. We spent several nervous minutes waiting for him. I think hospitals really should start every phone call with, “Everything is just fine” to prevent the parent worry factor. Anyway, the pulmonologist told us that he was more aggressive this time and was able to get some mucus plugs out of Samuel’s lungs. Samuel tolerated the procedure “ok,” but the doctor referred to him as “fragile.” Though they had to stop and restart several times because his stats would drop, in the end he did all right. The x-ray after the procedure showed that his right lung looks a little better, but his left lung is still entirely whited out. (A clear lung shows up as black space on an x-ray.) They are going to be using a more concentrated saline solution to try and loosen up the gook that remains in Samuel’s lungs. After the bronchoscopy, they switched Samuel to a different mode on the same ventilator in hopes of opening (and keeping open) his lungs. Initially after the procedure, he was on 95% oxygen, and his stats were a bit low; by the end of the day, he was on 85% oxygen, and he had a great blood gas numbers. Yea for good blood gases!

A couple of tests show that Samuel might be fighting an infection, so they put him on antibiotics to deal with it up front. He started the day looking not as puffy as the last several days, but he hardly peed at all today, and by the time we headed for home, he was very puffy in the face again. He has a hard time expelling all the fluids in his system.

We spoke with Dr. Clay, one of the cardiologists on the CICU, and he said that we will try for the MRI early next week. They want to wait a few days b/c the radiology department is on another floor, and they don’t want Samuel to be away from the CICU when he’s so fragile.

We realized today just how susceptible we are to fear in these uncertain times. Besides the moments in the garden while we waited for the pulmonologist, we had a couple other “scares” today. Bryan snuck away to get his haircut while we were forced off the floor for another kid’s procedure, and I tried to call him with an update. My call got disconnected, so I called right back. Since I called twice in a row (our signal for when we need to get in touch with one another), Bryan feared that I was calling with bad news. Later on, Bryan was coming back into the CICU after leaving for a few minutes, and he saw me crying a little. I told him that someone was coming from the OR – meaning a new patient – and he immediately wondered if I meant that someone was coming to take Samuel for emergency surgery. It’s amazing how sensitive we are to the fearful possibilities. Though we trust God and have His peace, we still find fear creeps in and threatens our calm.

You can continually pray for Samuel’s lungs – that they would open up and stay open, that his lung x-ray would look great in the morning, that he will be weaned off the ventilator, that he doesn’t have an infection, that they would be able to do an MRI next week, that his liver and kidneys are ok (his numbers haven’t been great), that he will pee off the excessive liquids, that his heart would not be too taxed, that he can get back on breast milk, that the pulmonary hypertension would continue to improve, that the doctors would be wise about Samuel’s care, and that his nurses and RT’s would be gentle, attentive, and cautious. And you can pray that Bryan and I honor the Lord in this season and that we trust Him no matter what we face.

Also, you can pray for the children on either side of Samuel. On one side is an upper-elementary aged boy, S, who has been on the heart-lung bypass machine (ECMO) for the last several days. He got off of it today but is still sedated. On the other side is a baby, K, who had surgery in his first few days of life. The doctors are now saying he probably needs a pacemaker as well and will need to be reopened every 5 years to replace the battery. You can pray his heart starts to beat as it should, and he won’t need the pacemaker.

Again, thank you to all of you for your kindness, love, and PRAYERS. This whole experience has challenged me to be more compassionate as I have witnessed your compassion for us. It’s been such a blessing to me, and I want to be able to have that kind of compassion for others in the same way you all have shown it to us. Words cannot begin to adequately express our gratitude. May the Lord bless and keep you all.

8 comments:

Hello dear friends. I am so thankful that God is raining down His compassion on you through his people. Praise God! And hip hip hooray for the Church! I am praying for your little guy and those pesky lung problems of his all the time. It doesn't surprise me that fear quickly creeps in--it is so hard for us to consistently trust, and Satan uses that to his advantage. I will pray for the power of the Holy Spirit to triumph over your fear and to quickly return you to peace and rest in Him who is holding you gently. I love you! Ki

I was sure by now,God, that You would have reached down and wiped our tears away, stepped in and saved the day. But once again, I say amen and it's still raining as the thunder rolls I barely hear You whisper through the rain, "I'm with you"and as Your mercy falls I raise my hands and praise the God who gives and takes away.

Chorus: And I'll praise you in this storm and I will lift my hands for You are who You are no matter where I am and every tear I've cried You hold in your hand You never left my side and though my heart is torn I will praise You in this storm

I remember when I stumbled in the wind You heard my cry to Youand raised me up again my strength is almost gone how can I carry on if I can't find You and as the thunder rolls I barely hear You whisper through the rain "I'm with you"and as Your mercy falls I raise my hands and praise the God who gives and takes away

Chorus

I lift my eyes onto the hills where does my help come from? My help comes from the Lord, the maker of heaven and earth I lift my eyes onto the hills where does my help come from? My help comes from the Lord, the maker of heaven and earth

We are all praying fervently for miraculous healing and a constant comfort and peace to ya'll. We love you!LoveMarta, Adam, and Grammiexoxo

Your fear is perfectly normal and understandable. Who wouldn't feel that in your circumstances? If you stopped being afraid it would most likely mean you had stopped caring. You are fearful for the ones you love. Thank God you are still human. Love to you all.......

Dear Kat & Brian,We continue to pray for Samuel and now also, his roommates. And for strength for each of you and peace and calm for the little boys back home. Thanking the Lord to for you mother's care for them in this time. We look forward to the day we will see you and all three boys together.God bless,Beth, Tim, Paul, & Jack

You all have been constantly on my heart the past few days, and even during the night on Wednesday when I couldn't sleep. I am praying for healing for Samuel, and god's continual comfort and presence for you and Bryan. Thank you for being so transparent in your posts. They are challenging my faith and my response to difficult circumstances. I can't wait for samuel to come home whee we can all get a good cuddle in!Shara